Ms Brenda Nambozo’s joy as a mother turned into fear when her child’s head began to grow larger. ‘I became really scared,’ Ms Nambozo, a resident of Nkoma in the Northern City Division in Mbale City, narrates. Ms Nambozo says the community told her that her child needed to be taken to a shrine for cleansing in order to be healed. ‘In many communities, hydrocephalus is often viewed as a curse. In some areas, there have been reports of drowning such children in rivers to rid them of this supposed curse but I refused that,’ she says.
‘I am a Christian and I cannot take my child to a shrine, and so I decided to take her to the hospital,’ she adds. At the local health centre, the child was diagnosed with hydrocephalus.Hydrocephalus is the buildup of fluid in cavities called ventricles deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain. Ms Nambozo is one of many parents grappling with the issue of neurological conditions in children.
Public health concern
Ms Angelina Wapakhabulo, the board member at CURE Children’s Hospital of Uganda, says neurological conditions continue to be a growing public health concern in Uganda, affecting both children and adults nationwide. ‘Studies show that millions of Ugandans live with disorders of the brain and nervous system, including epilepsy, hydrocephalus, spina bifida, stroke, and neuropathies,’ she says. A community survey in Mukono District found that approximately three percent of the population suffers from neurological disorders.
The most common neurological conditions include peripheral neuropathy (46.2 percent), chronic headaches (26.4 percent), epilepsy (8.5 percent), and stroke (7.3 percent). Nationally, experts estimate that more than 8,000 new cases of hydrocephalus occur each year, while spina bifida and brain tumors remain significant causes of childhood disability and death. Health experts attribute the rising burden of neurological conditions to factors such as birth complications, infections, malnutrition, and head injuries.
Mothers’ experiences
Ms Azida Namakula, another mother, says when she went into labour, everything seemed normal. The doctors prepared her for delivery, and within an hour, her baby arrived. However, the room fell silent. Her son, Ashan, was born with severe complications; his forehead obscured his eyes and nose. The midwife gasped and fled the labour suite, frightened by his appearance. Unlike typical newborns, Ashan did not cry, barely moved, and could not breastfeed. ‘I begged the doctors to let me stay for observation because I was scared, but they refused,’ Ms Namakula says. Upon returning home, her husband turned her away and stopped answering her calls after learning about the baby’s condition.
Meanwhile, Ms Stella Nabwire from Sironko District says her six-year-old daughter began complaining of headaches and fatigue. Initially, the family suspected malaria or stress from school. But as Mercy grew weaker, often holding her head and crying in pain, they sought help. ‘We went from one hospital to another, but no one could tell us what was wrong,’ Ms Nabwire says. She adds: ‘When they finally did scans, they informed me that my child had a brain tumour.’ In Budaka District, Ms Sophia Naula’s baby was born with spina bifida, a condition where part of the spinal cord is exposed, which can lead to paralysis of the legs without treatment.
‘I kept asking myself what I did wrong. What hurt me the most was that the doctors didn’t take it seriously; they claimed it was a minor issue,’ she says. Sent home without support, Ms Naula and her husband spent sleepless nights searching for help. Ms Grace Namutosi, a resident of Budaka District, recalls the day her life changed when her daughter was knocked by a speeding motorcycle. ‘She fell and suffered a severe head injury. We rushed her to the nearest clinic, but they said the injury was too deep and that she needed special care,’ she says.
Hope
However, CURE Children’s Hospital of Uganda offers hope to families struggling to take care of children with neurological conditions. The hospital, which specialises in paediatric neurosurgery, officially opened on January 19, 2001. Located in Mbale, it has become a beacon of hope for mothers and children facing life-threatening neurological conditions. It provides free treatment to vulnerable children suffering from conditions such as hydrocephalus, spina bifida, encephalocele, brain tumours, epilepsy, dermoid cysts, and other complex brain disorders. Annually, the hospital performs more than 2,000 life-changing surgeries and provides more than 11,000 outpatient treatments for children across the country and beyond. Over the past 23 years, CURE Uganda has treated more than 30,000 children.
Ms Nambozo says her local health centre referred her to CURE hospital, where the child underwent successful surgery. Ms Namakula says: ‘A friend informed me about CURE Children’s Hospital of Uganda where surgery was done and Ashan was cured.’ Ms Namutosi says doctors at CURE Children’s Hospital discovered that her child had a skull fracture and internal bleeding. ‘But the doctors at CURE worked tirelessly to save her. They cleaned the wound, performed surgery, and prayed with me. Today, my daughter is alive, laughing, and back in school,’ she says. Ms Naula says: ‘When I arrived at the hospital, I felt peace for the first time. They didn’t look at my child with fear-they looked at her with care.’ Ms Nabwire says the family sought treatment at CURE Uganda and a treatment plan was initiated. ‘It was difficult, but they gave me strength and they told me my daughter’s life mattered-and that changed everything,’ she says.
Funding
However, the hospital requires funds to treat the patients. Every year, the hospital requires about Shs19 billion to conduct the surgeries. Out of this, only Shs1 billion is raised locally through organised charity shows, the annual brain surgery runs, and donors, among others. The big share of funding comes from well-wishers outside the country. A single operation can cost up to Shs7.5 million. Ms Angelina Wapakhabulo, the former ambassador to Kenya and the wife of the late former Speaker of Parliament, James Wapakhabulo, says continuous generosity has remained a crucial lifeline for thousands of children suffering from severe neurological conditions.
‘Most families seeking care at CURE struggle to afford the high costs of neurosurgical procedures – a single operation can cost up to Shs7.5 million, an amount far beyond the means of many rural Ugandan households,’ she says. Dr Emma Wegoye, the medical director at CURE Children’s Hospital of Uganda, says without sponsorship, many children would not survive the conditions. ‘We receive children from all regions of Uganda and even from neighbouring countries, but many still fail to reach us due to poverty,’ Dr Wegoye said. To raise additional funds and attract more donors, CURE Uganda organises the Brain Surgery Run each year. This year’s event, the CURE Brain Surgery Run 2025, has a goal of raising Shs1 billion to support children needing life-saving brain surgeries. The event serves not only as a major fundraising drive but also as an awareness campaign that rallies communities, partners, and individuals to support children suffering from severe neurological conditions.
Mr Tim Erickson, the executive director of CURE Children’s Hospital of Uganda, said CURE’s approach goes beyond treating illness; it restores hope, faith, and purpose to families who have lost all three. ‘At CURE, we are not just performing surgeries; we are restoring dignity, rebuilding families, and healing communities,’ he said. Mr George William Wopuwa, the Resident City Commissioner (RCC) for Mbale City, commended CURE Uganda for its long-standing service to the nation. “I was here in 1997 when we broke ground for this hospital, and it is an honour to return after all these years,’ he said. Ms Rosemary Kusaba Byanyima, the executive director of Mulago National Referral Hospital, praised CURE Uganda for its crucial contribution to managing neurological cases in the country. ‘CURE has been a great support to us, particularly given the increasing number of neurological cases in Uganda,’ she said.